Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 > > Hello LDN Advocates, > > I've been fortunate enough to have started ldn tx for MS dx in June 05. Began ldn tx on 10/29 (homemade) - 1/2 tab crushed in 25ml H2O 3ml in juice @ 11:pm nightly. > > By Monday 10/31 it seemed like I could think more clearly, and B & B " normal " for first time in months! Same on each subsequent day. The down side however, waves of extreme fatigue intermittently throughout the day with pain and increased stiffness, can't keep my eyes open during the peak fatigue times. > > I thought I'd eliminated any contraindicated meds, and did not find those which I must take on the incompatible list, but it is possible I've overlooked something, " foggybrain " and all. I'll list all meds and would very much appreciate it if someone can let me know if I am doing something wrong or if what I am experiencing is expected, and will hopefully, resolve with time. > > Meds: Norvasc 10mg qam, Bumetanide 1mg qam, Tramadol 50mg bid, Provigil 400mg qam/ & 200mg PRN., > and numerous vit and min supplements. Also regular aspirin or arthritis formula powders for degen. disc. and joint - osteo arthritis. Was using Spiriva for COPD, but stopped before starting ldn, that's been a struggle. I completely believe in ldn so the fault must be in one or more of the above.....Your guidance is needed and appreciated. Thank you. > > Georgina > ========== In many people taking LDN they have found it to act as a mild diuretic so you may need to adjust your other diuretic. Your extra fatigue could be due to that and maybe not. If possible try coming off as many of your meds as you can. I understand your BP meds are vital. You might want to try later down the road going without the Tramadol and Provigil and see how you feel. See below. For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms. When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms. Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days. Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work. In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified. Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively & quot;catch up & quot; that the normal balance is restored and symptoms once again diminish and improve. Dr. M R Lawrence Posted by Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 Georgina I didn't realize you are on Provigil for Narcolepsy, I thought you were using it for MS fatigue. Continue to stay on the Provigil. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 > > Hi...my name is Ric and I recently joined the list...I am hiv+ and have been for 16 years...so far everything is just fine (knock on wood)...but I had an appointment with my infectious disease doctor on thursday and inquired about LDN...she replied she had never heard of it...I know maybe being in Arkansas there might be a lag as far as information...but she attends the confrencense in SF and across the country when it come to HIV and Aids...shouldnt they have heard of LDN...and is there a link I can give my doctor for her to actually look at and see what I am talking about...thanx...hope everyone is doing ok...thanx for your time....take care Ric ======== I am from Arkansas also with Multiple Sclerosis. The reason LDN is not mentioned is it is not FDA approved for the treatment of HIV. Give your doctor the link to the LDN website. If you are not successful in getting LDN from your doctor let me know and if you are in the Heber Springs area my doc could see you & give you an LDN script. He is an Ophthalmologist and Alternative Medicine doc. You must get your eyes examined for the script of LDN. LDN website http://www.low dose naltrexone.org If you don't want all the posts coming to your inbox then click on Edit Membership towards top of the forum on lefthand side and make your choice on how you'd like to read the messages. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 Hi Georgina, I take provigil for my ms and it helps me to function. I would be lost without it. I am very interested in the what meds. block provigil? Is it documented anywhere or did you notice this happening when you went on certain meds? I would be leary of stopping the provigil when used for narcolepsy. Just be careful okay! As for the link with narcolepsy and ms. If you consider narcolepsy to be an autoimmune disease then it's not uncommon to suffer from more than one. It seems most people I talk to that have one will generally suffer from another. I have ms, hidradenitis suppurativa and am a cancer survivor. Good luck with the ldn! --- > > Thanks . I tried to eliminate the tramadol last night, the pain awoke me several times, tried to do without it most of today but gave in about 3pm, pain and spasms were too much. It does not eliminate just alleviate, it helps enough to allow me to be somewhat useful. I'll try to cut down at first, see how little Tramadol can be taken instead of just stopping abruptly, should have done that first. > > I'm afraid of eliminating the Provigil, I'm severely narcoleptic, also wonder if there is a link. Which actually came first the N or MS. Narcolepsy dx 10 years ago, but sxs most of my life; MS sx 30+ years, dx in 6/05. Read about a few others who have both, wonder how many others there are. > > Provigil keeps me alert but has been blocked by certain pain meds, thus the Tramadol. It is the only pain med which has not interfered with effectiveness of Provigil. Catch 22 it seems. Trial and error time depending on the individual or is there a hard and fast rule? Did not think these meds were in those Dr. Lawrence listed, or did I miss something? Thanks again. > > Georgina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 Hi Arlene, I don't think anyone knows for sure. Like ms there is more than one theory. Wow since 13? Here are a couple of sites with different theories. Go to http://adam.about.com/reports/000098_1.htm And http://med.stanford.edu/school/Psychiatry/narcolepsy/faq1.html--- In low dose naltrexone , arlizotte@a... wrote: > > > In a message dated 11/6/2005 3:49:17 PM Eastern Standard Time, > pomsaregreat@y... writes: > > If you consider narcolepsy > to be an autoimmune disease then it's not uncommon to suffer > > > Hi > Does anyone know if narcolepsy is an autoimmune disease. My brother has it > and has had it since he was about 13. He's 63 now. > Arlene > Quote Link to comment Share on other sites More sharing options...
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